Today is World Hospice & Palliative Care Day.
It is a unified day of action to celebrate and support hospice around the world. The theme for this year’s celebration is, “Achieving Universal Coverage of Palliative Care: Dispelling the Myths.”
There are many misconceptions in the public about what hospice and palliative care are and what they aren’t. Over this past week, we have been sharing on Facebook some of these myths, courtesy of the Worldwide Palliative Care Alliance. We encourage you to share these with others in your area, in order to help raise awareness and understanding of what hospice and palliative care truly mean.
MYTH: Having hospice and palliative care means you will die soon.
FACT: Hospice and palliative care is not just for the end of life. It is a holistic approach that includes caregiver support, spiritual care, bereavement and much more.
The truth is…Hospice and palliative care is about having the best quality of life for however long life remains. Palliative care patients have serious illnesses that eventually bring about the end-of-life but up until then it is important to be free from pain, symptoms, and suffering. Recent studies show that many patients who receive palliative care may live longer than those receiving standard care based on a more curative model.
MYTH: Hospice and palliative care is just for people with cancer.
FACT: All those who are diagnosed with a chronic life-limiting illness can benefit from hospice and palliative care.
The truth is…Many people still think that hospice and palliative care are just for cancer patients. In the early days of hospice most patients had cancer but as hospice and palliative care have grown, more patients with non-cancer life threatening conditions are being cared for. These conditions include heart, lung, liver, kidney, brain, and motor neuron diseases as well as very frail elders. International research shows that about 70% of all people who die would benefit from access to palliative care services.
MYTH: Palliative care manages pain through the use of addictive narcotics.
FACT: Palliative care is holistic care that provides psychosocial and spiritual care along with pain and symptom management.
The truth is… The founder of the modern hospice movement, Dame Cicely Saunders, came up with the concept of “total pain” to describe how patients with life limiting illnesses experience suffering in many dimensions. These include physical, social, psychological, and spiritual or existential suffering. Pain relievers like morphine are essential to good palliative care to relieve pain and other symptoms and can be safely used, but other measures are also needed to address pain including counseling and social support.
MYTH: I can only get palliative care in a hospital.
FACT: Palliative care services are offered in many places, including hospitals, hospices and in your own home.
The truth is… Hospices and palliative care programs provide care wherever the person and family reside. Usually that is the place you call ‘home,’ whether it’s a private home, an assisted living facility or nursing home, or even a shelter. In fact the majority of palliative care is home-based care. Palliative care can also be provided for short periods in the hospital or in special hospice units or freestanding inpatient facilities.
MYTH: Hospices are generally just for old people.
FACT: Hospice and palliative care is for people of all ages.
The truth is… People don’t like to think that children die, however a big part of palliative care is care for children. People of all ages can develop a life limiting illness and palliative care programs need to be prepared to care for patients of any age. In some countries there are special hospices and palliative care services devoted to the care of children.
MYTH: Everyone has access to hospice and palliative care.
FACT: Though every person has the right to hospice and palliative care, there are many around the world who do not have access to hospice and palliative care. In fact only about 10% of the need for palliative care is currently being met worldwide.
The truth is… Access to palliative care is a human right. No healthcare system in a country is complete without including palliative care as an available service. However palliative care is mostly limited to countries in Western Europe, North America, and Australia. Efforts are underway to expand palliative care to low and middle income countries so that every country can have palliative care. A recent study identified 43% of countries with no palliative care delivery.
What other myths or misconceptions about hospice and palliative care have you heard? How has your agency worked to dispel them? We would love to hear from you!
Learn more about Meghan Henry.
The use of social media such as Facebook and Twitter can be a powerful tool for hospices looking to share ideas, news and build relationships online. Using social media effectively can also increase your online presence, helping your agency show up more frequently in search engines like Google or Yahoo.
Here are some tips on how you can use social media to engage caregivers, consumers and the community:
- Begin by creating accounts with the most popular social media including Facebook and Twitter. Don't be afraid to explore other types of social media including Instagram, Pinterest and LinkedIn too.
- Do you have a website? If so, develop a blog to go along with it. Blogs are designed to provide news, commentary and updates on the latest happenings in your organization and hospice industry. You will find that many people will subscribe to your blog and read it regularly.
- "Friend" or "follow" other local businesses from your community. "Like", "share", "re-tweet" and comment on their posts. This will help spread your brand to their friends and followers that may not be connected to your business just yet.
- Use your account to promote education about hospice care, events your agency may be hosting or attending and even spotlight your staff or agency achievements.
- Encourage your staff members to connect to the agency account by “friending”, “following”, “sharing”, “liking” and “tagging”. Just be sure to create an internal social media policy and educate your staff on acceptable use when posting on or about the agency account.
Once you get started and have your accounts set up, it only takes a few minutes a day to update your social media message and get the word out about your agency. As the viral generation grows, more and more people will be looking to the Internet and social media to find care options for their loved ones. Don’t be left behind!
Want to see examples of social media sites? HEALTHCAREfirst is on a number of sites including Facebook, Twitter, LinkedIn and an online blog.
Learn more about Claire Potter.
The Importance of Advance Care Planning
Did you know that in a past study conducted by the U.S. Agency for Healthcare Research and Quality, less than 50% of terminally ill patients had and advance directive in their medical records?
Today, April 16th, has been designated as National Healthcare Decisions Day. On this day, we encourage home health and hospice caregivers to educate your patients on the importance of expressing their wishes regarding healthcare. All adults can benefit from discussing and identifying the healthcare choices they want made should they be unable to do so on their own. Most can utilize an advanced directive so that loved ones as well as medical professionals are aware of their desires.
There are two types of Advance Directives: a living will and medical power of attorney.
A living will is a legal document that allows someone to control his/her wishes for medical treatment at the end of life. It covers health care decisions when they are terminally ill or permanently unconscious and unable to make decisions on their own. State laws vary on the exact terms of a living will, but they are generally designed to allow doctors to stop the process of prolonging life.
Medical Power of Attorney
A medical power of attorney legally allows a person to name someone else who is designated to make decisions about their medical care should they become temporarily or permanently unable to express those wishes on their own. Many people may have both a living will and a medical power of attorney directive. The medical power of attorney is able to make decisions that were not addressed in the living will.
Talking about advance directives is an important part of the caregiving process, particularly in hospice care. Educating your patients about their desires can help to empower them about their health care choices. The internet has a number of fantastic resources available to families and caregivers who are interested in learning more about advance directives as well as communicating end-of-life wishes including:
The Conversation Project
Dedicated to aiding families in discussing their wishes for end-of-life care and treatment.
Caring Connections from NHPCO
From the National Hospice and Palliative Care Organization, provides free advance directives and instructions for each state
End-of-life planning guidance and advice for families
Learn more about Meghan Henry.
This just in from CGS...
On April 2, 2013, CGS notified providers through a listserv message that a system problem had been identified which impacted hospice claims (types of bill 81X and 82X). CGS has also determined this is affecting type of bill 34X. These claims were being returned to the provider (RTPd) inappropriately with reason code 32061. The Centers for Medicare & Medicaid Services (CMS) has informed CGS that this edit will be turned off, and contractors can release these claims to continue processing. Providers with claims in status/location T B9997 with reason code 32061 do not need to take any action. CGS is in the process of releasing these claims, and anticipates all claims to be released within the week.
Hospice Claim Reason Codes Returned to Providers
Two of the Medicare Administrative Contractors (MACs) have reported a system issue impacting hospice claims (types of bill 81X and 82X) that are being returned to the provider (RTPd) inappropriately with reason code 32061. This reason code indicates a split claim is required on all non-PPS bills when the TO date on the claim overlaps the fiscal year end of the provider.
The MAC’s that have currently reported this are CGS and Palmetto GBA, both of which have posted notices to their claims processing logs on their websites. They hope to have the issue resolved soon. Currently NHIC and NGS have not posted any information on their websites regarding whether or not this is impacting their providers.
Palmetto GBA: Click here.
CGS: Click here.
Learn more about Deanna Loftus.
Yesterday, Louisiana’s Health and Hospitals Secretary Bruce Greenstein announced the reversal of plans to cut the Medicaid hospice program. The announcement was made as hospice program supporters gathered on the state capitol steps to protest the cut.
The cut would have made Louisiana one of only two states that don’t pay for hospice care through its Medicare program. There was strong resistance from state senators and hospice advocates alike. They argued that cutting hospice would not save the state money, as hospice care costs approximately ¼ of the same treatment received in hospitals.
The state will use federal grant funding to keep the hospice program running.
We applaud the state of Louisiana on the decision to not make cuts to hospice care for Medicaid patients, recognizing the value of hospice care for everyone.
Learn more about Claire Potter.
Late last month, Louisiana’s Department of Health and Hospital announced that effective February 1, 2013, the state’s Medicaid program would no longer reimburse for hospice services to new hospice patients at home and in nursing facilities. However, those currently in hospice care will keep services.
The cut in hospice services is part of $165 million in proposed state budget cuts. State officials say the cuts are needed because of revenue shortfalls, with the budget needing to be balanced by the end of the fiscal year.
According to State Administration, Medicaid paid for approximately 5,189 patients receiving hospice care in 2012, an average of $2,202.81 per patient. They contend that the cut will save the state more than $10 million in 2014. The Louisiana-Mississippi Hospice and Palliative Care Organization (LMHPCO) argues that hospice care costs ¼ of what the same treatments would cost in hospitals. They also state that in 2009, Arizona eliminated its Medicaid hospice benefits, but quickly reinstated after just one year, when Medicaid costs rose by an estimated 4.4%. Click here to read LMHPCO’s statement regarding these cuts in its entirety.
At HEALTHCAREfirst, we know the value of hospice care. These cuts not only affect the over 140 hospices in Louisiana, but the thousands of Medicaid patients who would be eligible for hospice services this year. Hospice allows people to die at home with dignity, receiving not only medical, but emotional and spiritual support for them and their families. These patients deserve better than spending their last days or weeks in a hospital.
What are your thoughts about the State of Louisiana cutting Medicaid payments for hospice care? Are you concerned about this happening in your state?
Learn more about Claire Potter.
Recently, former Senator John Breaux (D-La) wrote an article entitled, “Preserving the Medicare Hospice Blog,” which was published in the Congress Blog on the online version of The Hill, a newspaper written for and about the U.S. Congress. In this article, he discusses the value of the Medicare Hospice Benefit and the need to retain this type of care, particularly as the hospice payment system is currently undergoing review.
While he does see the need for increased accountability within the Medicare program, he encourages Congress and the regulatory agencies involved to be reminded of the unique nature of hospice care, particularly regarding the “very singular nature of each patient’s response to care.” He goes on to say, “This recognition will go a long way toward protecting the intent that my colleagues and I had when we enacted the hospice benefit. More importantly, it will preserve this unique benefit so that it can continue to bring greater comfort and meaning to the lives of terminally ill individuals and those who love them.”
To read Breaux’s article in its entirety, click here.
Breaux was a member of the House of Representatives when the Medicare Hospice Benefit was created in 1982 and has been a longstanding advocate for hospice care. He currently is senior counsel to Patton Boggs LLC and includes the National Association for Home Care & Hospice (NAHC) as a client.
How do you feel about potential changes being made to the Hospice Medicare Benefit?
learn more about Bobby Robertson
Two recent updates that are important for Hospice providers to take note of are as follows:
The CMS Hospice Center was updated recently and CMS is seeking public comments on possible additional data collection on hospice claims. CMS also has an update on revisions to hospice cost reports.
The possible future hospice data collection pdf can be located at the CMS Hospice Center or here.
The Hospice claim example can be downloaded here.
CMS is asking for feedback on the suggested data collection by January 31, 2013; comments should be sent to HospiceData@cms.hhs.gov. HEALTHCAREfirst recommends providers take advantage of the commend period and provide feedback.
In addition to possible future data collection items, CMS recently announced that the Hospice Quality Reporting Program Data Submission Webex has finally been re-posted and is available. WebEx training about how to do web-based data submission is available on the QTSO website. Hospices can access the WebEx at their convenience at: https://www.qtso.com/hospicetrain.html.
The average mesothelioma prognosis is less than a year from the time of diagnosis.
While roughly 10 percent of pleural mesothelioma patients achieve five-year survival, most patients find themselves facing a short life expectancy – and trying to determine what to do about it.
Patients diagnosed with an earlier stage of the cancer may pursue curative treatments, but the patients who are diagnosed with stage III or IV disease often turn to palliative therapies instead. For mesothelioma patients who have a prognosis of less than six months, hospice may be an ideal route for obtaining this quality of life-focused care.
Entering hospice is not giving up. It does require patients to confront a terminal diagnosis, but it is often one of the most compassionate and effective palliative care programs available.
Hospices vs. Other Types of Palliative Mesothelioma Care
Hospice incorporates a number of different types of care. Specially trained health workers can administer medications (including pain medications and anti-anxiety medications), and nurses at inpatient facilities can monitor the patient’s condition round-the-clock.
Hospice also offers emotional and spiritual care benefits. Patients can participate in support groups, as can their families. Furthermore, hospice patients have access to social workers who can help them with end-of-life arrangements and wills.
Some patients can receive hospice care in their own home. This is especially beneficial for patients who are too ill to pack their belongings and adjust to a new living environment. In-home hospice also allows patients to spend this essential time with their loved ones in a familiar setting.
Author bio: Faith Franz has spent nearly two years researching and writing for The Mesothelioma Center. As an advocate for alternative medicine, she encourages patients to explore all of the treatment options that could potentially save their life.
I recently attended a policy summit for the Missouri End of Life Coalition. The theme of the meeting was “Finishing Life Well: We Can Do Better”. While the sessions were excellent and thought provoking on the topic, there was one attendee that was just lit with passion on the subject.
Nurse Nancy* was a 70 year old hospice nurse with short, white hair and an almost frail looking body. She was dancing and singing along to the classics when she came over to me and posed the following question:
“You know, there are two certainties in life. You were born and you will die. Medicine has done such wonderful things to make child birth easy and comfortable for both the mother and baby, why can’t we do that for death? ”
It took me a while to process what she had asked me. That night in my room, I began thinking through all the stories of death I’ve either experienced or heard over the past years. My grandfather, one of the smartest and most physically fit men I’ve ever known, being overcome by dementia and spending his last months lying in bed, barely able to sit up – and my grammy, still as young as ever, staying home day-in and day-out to be with him, trying to glean as much time as possible. A 3 year old boy in my community suffering from brain cancer being so medicated due to the pain that he was unable to interact with his parents and sister as he was dying.
I had initially thought the summit theme and Nurse Nancy’s question were about making death and dying easier for the patient. But now I wonder if we work harder at making death easier for the care givers and loved ones, could that in turn make it easier for the patient, much like a mother being properly prepped and comfortable can make the birthing process easier and less stressful on the baby?
*Names have been changed